Instead of moving out, I had to start shielding (Picture: Natasha Coates)
It’s almost the one-year anniversary of my last day of freedom.
Since 16 March 2020, I’ve not been to a single shop. I’ve not seen my friends. I’ve barely even been outside my house.
I have a rare immunological condition called mast cell activation syndrome. It causes my body to significantly overreact to perceived attacks – which include everything from strong smells to certain foods and temperatures – with anaphylactic shock.
Before lockdown, I was in hospital on average every fortnight, regularly having to be rushed in due to severe allergic reactions.
Having to call an ambulance when you’re trying to have a nice time with your friends really kills the mood, let me tell you.
This highly unpredictable condition impacts every single aspect of my life – from what household products I can use to who I can hang out with and how I spend my time – and puts me at high risk of dying from Covid-19.
It also created a huge dilemma for me when news of people being vaccinated in the UK started to surface in December.
That’s because vaccinations cause an immune response in your body, which is how you create antibodies. But as my immune system doesn’t work like everyone else’s, my body makes itself extremely sick during this process.
When I’ve taken medications (even antihistamines) in the past, I’ve had severe reactions.
So, although I was hopeful for my parents and friends when word of a Covid-19 vaccine started to circulate, I had no intention of having the jab myself.
But then, slowly, the risks I was worried about started to be outweighed by the relentless anxieties and unsustainable limitations the virus was causing me to live with.
A year ago, I was in the process of getting a personal assistant so I could finally move out of the family home I share with my parents and into my own place. Independence, in some shape or form, was in sight.
I was so psyched up for it and couldn’t wait to get on with my life.
Of course, the pandemic put paid to that. Instead of moving out, I had to start shielding – it was a huge blow.
The first few months were the hardest; there was so much uncertainty that I couldn’t risk going outside at all, not even just for walks.
My parents have shielded too so that the house is safe for me, but this has made accessing things we need really tough. Recently we had two food deliveries fall through in a row – one just three hours before it was meant to arrive, leaving us totally in the lurch.
In the end, I became just so exhausted from living in constant anxiety (Picture: Natasha Coates)
Recent research from Scope has also found that half of disabled people have had difficulty getting deliveries from supermarkets. A third said their health has been impacted due to issues accessing food.
The situation is made even more tricky because I have such a restricted diet – my condition means there are lots of things that I can’t eat.
Before Covid-19, if I tried something new and had a reaction I could at least go to hospital. This isn’t an option anymore. That building, which was once my safety net, has become too dangerous.
Luckily, people have been really helpful in dropping off necessities for us, but I hate relying on others.
It all makes me acutely aware of just how vulnerable I am.
Shielding as a family has also meant that my relationship with my parents has been put under real strain. I love them very much, of course, but there’s only so long you can be cooped up with someone before you start getting on each other’s nerves. We’re over the worst of it now thankfully, but it’s been tough on all of us.
Having to give up so many aspects of my life – seeing friends and going to gymnastics training – has made it almost unbearable to see how some are blatantly manipulating and downright ignoring the rules.
Reading people’s opinions online that the vulnerable should just be kept at home so everyone else can get on with their lives makes me feel like I don’t matter. Like people don’t think the vulnerable contribute to society or lead a full life.
In the end, I became just so exhausted from living in constant anxiety – having to obsessively spray everything down that comes into the house and being petrified of infection all the time – that I knew I had to take the risk and get the vaccine.
I also spoke to my doctor about it but there wasn’t really a clear answer about what it could do because each person with my condition reacts so differently.
It was an impulsive decision: I booked it on a Monday night and went in on Tuesday morning. My mum cried – I was one of the first people with mast cell activation syndrome to have the vaccine so we had no idea how my body would react – but my parents knew that it was my choice and they supported my decision.
It was terrifying. But sometimes you just have to put your big girl pants on and get on with it. So, when I walked into the vaccination centre I was thinking positively, excited at the prospect of being able to see friends again and get out of the house more.
After having the injection I quickly developed a headache and started to feel quite tired. But this was just the warm-up: I had no idea at the time what the next two days had in store.
After about 10 hours, my body’s faulty immune responses hit me head-on. I was so hot I became delusional – my temperature was 40.4 degrees and my resting heart rate soared to 150bpm.
I was in so much pain – it felt like my entire body was on fire. The temperature outside was minus two but I stood by an open door, shaking violently, trying desperately to cool off.
Sleep didn’t come until 6am the following morning. After two hours, I woke up still feeling horrendous, but the short rest had taken the edge off. It was a good couple of days before I started to make any meaningful recovery.
If that was what the jab did to me, I can’t even imagine what it would feel like to catch the virus.
I’m aware that some people without auto-immune conditions have also had adverse reactions, so I have no idea if it would have happened to me regardless, but I’m glad I got my jab. If anyone is unsure, I would recommend for them to speak to their GP.
I’m slightly less anxious now that I’ve had the first dose and survived it. Although the second dose looms over me like an ominous dark cloud – I just want to get it over with.
I’m still shielding as carefully as before; I’m going to wait until we know more about the vaccine’s effect on people with conditions like mine before I start going out again.
I’ve come too far to risk my health for the sake of going to the supermarket.
I’m really hoping that, on the other side of all this, after everything we’ve all been through, people are a bit more understanding about conditions like mine.
I think I’ll feel more confident asking strangers to give me a bit of space when I’m out, with social distancing having been the norm for a year. And perhaps I won’t get funny looks anymore when I wear a mask outside, like I used to.
Because even after the vaccine, I won’t be able to put mine in the bin like everyone else come 21 June.
As told to Jessica Carter